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Monday, 28 September 2015

I brought Gideon to the hospital yesterday to get him checked out. He has a nasty cough/wheeze and was even throwing up yesterday. (Whole bottles!) With our current feeding issues, I wanted to make sure he didn't have pneumonia (infection in the lungs) due to aspiration. The chest xrays looked fine but he sounded really crackly. The doctor gave us a prescription for two different puffers and told us to keep on eye on him. Last night he actually slept. Prior to this, my poor little chickadee had not been sleeping so well with all the coughing and wheezing; I'm glad the puffers are working. He's still a little crankier than usual. On the up side he's loving the snuggles, which I am more than happy to give.

Let's all hope that the puffers keep the pneumonia at bay and this clears up sooner rather than later.

Friday, 18 September 2015

1. I have started back at work for two days a week. My work place is being fairly accommodating by letting me return to work on a temporary part time basis and working up my hours, back to full time, over time. This has been a very difficult decision for me. It has been tormenting me for the past few months. I knew that Gideon was not ready for me to go back full time and that a full time schedule would not be able to accommodate all the in house workers that he still needs to see. (Physio, OT, Dietitian, Speech, Low Vision) I thought that I should at least trial it. To be honest, it's still really difficult for me to say if I am hoping this will succeed or not. I guess this is where blind faith comes in. I feel like I can only sit back and watch as things go in whatever direction they may - Laissez-faire - not interfering, just floating along as usual, letting life's events dictate our course.

2. Gideon has started daycare. With me returning to work, Gideon has started attending a daycare for two days a week. We had to put him in a larger center, rather than a small in home daycare, so he could receive the funding for one on one services. This means that Alex and Gideon are going to two separate places and our morning drop off's are tight- very tight. Gideon's first day went really well. My only concern is that it is a French daycare. Because Gideon is blind, he needs a lot of auditory cues letting him know what is going to be happening. Maybe the French will be confusing, maybe it will be stimulating, maybe he will come home one day saying "le waaaaaa"- only time will tell.

3. Test results have come in. We had our eye exam under sedation on Wednesday. Our eye surgeon said that the cataracts are nowhere to be seen and that his eye pressures where looking good. She did reassert that the back of his eyes are very under developed- this would be his Anophthalmia/Mircophthalmia . One blessing is that his manifestation could be far worse and that it doesn't really effect his appearance. She also mentioned that his eye prescription has changed slightly- I'm not sure what it is now but it should be in the mail.

We also saw the geneticist on Wednesday. She is doing a test to rule out Lowes Syndrome . She also reviewed the MRI Gideon had last month. There was some thickening in specific parts of his cortex. The radiologist didn't know how to interpret what he saw so the geneticist is referring us to a neurologist. We also talked about what our next step would be if Lowes Syndrome does get ruled out- an expansive exome sequencing test that would compare Gideon's gene's to both mine and John's. It usually results in a 25% chance of finding a diagnosis. This test could, if we wanted to, also find gene's responsible for medical conditions not associated with his syndrome ie. a gene responsible for colon cancer. Because John and I are also submitting samples, we have the option of learning about our own genes and if we have any that can impact our health. Whether we actually want to know this is another question. If it comes to this test, we will have to think hard on it.

Friday, 11 September 2015

I'm not sure exactly when I gave up my own personal hygiene needs in lieu of parenting. I think it was somewhere in-between giving up my fashion sense and my sad demise of variety in the kitchen. Here are my time tested tips to help other parents completely give up on their hygiene too.

Tip #1: Showers are a luxury item just like a fine wine or a date night. Having time to shave your legs in the shower is even rarer. Long pants and socks are your friend.

Tip #2: If your infant throws up in your hair, just pull it up into a pony tail or put on a hat. See Tip #1 for clarification.

Tip #3: The same pair of jeans can be worn around the house for multiple days (or until you actually have time to do the laundry) unless you encounter that scene from the Exorcist that leaves you sitting in puddles. I draw the line at wearing soaking wet puke jeans and t-shirts that are stuck to your back with spittle.

Tip #4: Make-up and shaving are designated for doctor's appointments, in a heart felt attempt at looking put together and "being on top of things".

Tip #5: Take advantage of the fact that your clothing has multiple purposes: Nose wipes, face wipes, spittle rags, and drool catchers all can be replaced with your everyday attire.

Tip #6: Long hair = Fashionable - Seriously who has time to visit a hairdresser with all those other appointments in your life? Plus pony tails and hats- right?

Tip #7: Who needs perfume or body spray when you have deodorant? One application in the morning and you are good to go. Plus if you forget to apply it or are distracted with all the things needing your attention, all the better. Embrace your inner hippy.

Tip #8: Do brush your teeth but remember to push off your regular dentist appointments in lieu of your child's appointments/ homecare schedule. This can also apply to your own doctor's appointments and any other personal appointments that do not involve severe bleeding, broken bones or lost limbs.

Tip #10: Treat yourself once in a while and you will enjoy it and appreciate it. You will savour every last bit of it. Wash your face with a high end soap. Paint your toe nails. Soak in a tub. Buy yourself one of those fancy electric toothbrushes that makes you feel like you just left the dentist office.